Thinking about dementia

There's a post that's been making the rounds of social media, called 16 Things I Would Want, If I Get Dementia. It's a well-intended list, written by someone who works with dementia patients. Yet I find it sticking with me, not in sympathy, but in anger. To me, living with the reality of my mother's health, this reads like an impossible and selfish fantasy, designed to make family members feel guilty for not fulfilling the simple desires many of us might share for our declining years.

I won't respond to each of the sixteen items on the list, but here are a few thoughts:

1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
Because it isn't painful at all for a family member to hear you fret as to why her children don't visit, when they're right there, unrecognizable as the kids they once were; or to grieve again and again the loss of another parent that the survivor's mind cannot grasp. Because it isn't hard to witness the detachment from reality of someone who once defined your own understanding of what was real.

2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
The adult who cannot feed or bathe herself, who needs your help to go to the bathroom, who frequently has accidents requiring intimate intervention humiliating for both of you. Who can't tell a story or follow the answer to the question she's asked twelve times in the past hour. Who demands things that are unachievable and pouts when her demands are denied. Who makes up stories and then demands validation and action based on these untruths. Treating you like an adult would be cruel.

3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
Friends who've let you drift, with whom I never had a connection, who are mostly dead. Those friends? To exercise, when convincing you to walk down the hallway is a battle of wills and an exercise in pain? To read, when the words don't make sense on the page and you can't follow the thread well enough to listen to a single paragraph?

4. If I get dementia, ask me to tell you a story from my past.
You mean the one you told me last week, the same one that every memory seems to lead to now, about your difficult childhood, that no unremembered telling can lance, that left me in tears the first twelve times and now only makes me numb for its repetition, grieving that in your fear this is where your memory invariably takes you.

8. If I get dementia, don’t talk about me as if I’m not in the room.
Because letting you zone out while I talk to the doctor, contradicting most of what you say, is not better than having you argue with me about whether you've been using a walker for three weeks or three years, or whether your most acute symptoms emerged last week and not six months ago? Because you don't know why you're in the hospital and you're not sure where you are, anyway?

9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
This is the one I can endorse whole-heartedly, except that there is nowhere that can be completely trusted, where your person and your belongings are truly safe, where the failure of our society to remember the elderly in its plans is not painfully evident.

10. If I get dementia, and I live in a dementia care community, please visit me often.
Because I need for you to be brought to tears regularly by the wreck of my body and my personhood. That you cry on the drive home is not important as long as it's at least once a week.

14. If I get dementia, don't exclude me from parties and family gatherings.
Because making a difficult and often painful journey to be part of a gathering with people you no longer recognize, whose conversation confuses you, where you require constant care and attention, which you won't remember in a few days, is worth it for the sense of family.

16. If I get dementia, remember that I am still the person you know and love.
Except you're not. Because the person that you knew would have been horrified by who you are now.

It's not always this bad--this is drawn from personal experiences with my mother, my grandmothers, parishioners we visited when I was a child, stories others have shared with me (often in tears). And the reactions are personal--what makes me crazy may not faze my sisters, and vice versa. But here's my list:

If I Get Dementia:
- make sure my DNR is up to date and includes no antibiotics for pneumonia nor any other intervention that might prolong my life, if you are not allowed to assist my suicide
- get me the good drugs, the ones that leave me pain free and zoned out
- warehouse me somewhere convenient, that you can drop by for 10 minutes on your way somewhere else, so the staff have some incentive to pay attention to me and not steal my stuff
- don't hold it against me--I won't be the person you knew and loved
- don't feel guilty--aging is a crapshoot and all too often a shitshow and I will know that you are doing all you can, whatever that is
- live well, with my very best wishes